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Wednesday, 26 February 2014

So, when I posted just the other day on the embarrassing setbacks and "tactical withdrawal" of the, to my eyes indefensible (my arguments have been presented here, here and here), plan of the UK national health service to start a system (called care.data) for giving access to partly identifiable patient data (in view of recent demonstrations, I would say wholly identifiable if there's some genetic data in there) not only for public research institutions, but also private companies, some with obvious vested interests to use said sort of data against individual people, I frankly thought that this would be the last we heard about this scheme for some while. Surely, I believed, the NHS Health and Social Care Information Centre, which handles this whole shebang, would now be very, very sure to do everything right and not attract any attention. I was wrong.

Today, the BBC reports about a hearing by the parliamentary, cross-party Health Select Committee, where NHS bosses were confronted with allegations voiced this Monday that, in fact, confidential patient data had been handed over to private insurance industry a good while earlier, and the intention of said industry was – surprise! – actions which go against the interests of patients:

But on Monday it emerged the Information Centre - or NHS Information
Centre as it used to be known - gave that hospital data, which was
largely anonymous, to the insurance industry in 2012.
A report was then produced advising insurance and investment firms how it could use the information to price their products.
The Information Centre has now said this should probably not
have happened as it should have applied "greater scrutiny" to the
application.

"Should probably not have happened", is that the understatement of the month on the royal island, by any chance? MP's in the committee are reported to have rightfully swung Centre boss Max Jones by his ears when he was unable to provide an account of why the data had been shared in this way. MP Rose Cooper is reported to have commented afterwards: "It is amazing how many questions we've not got answers [to]." No wonder Sarah Wollaston, tory MP and herself a GP is reported to have said (with admirable restraint, to my mind): "I'm very disappointed...this threatens public confidence."

Indeed it does. Besides the interests of ordinary people who now and then needs to visit the doctor, that is. Besides the interests of people who feel a need to purchase private health insurance to have an adequate protection. Besides people who now and then needs to purchase pharmacological products for treatment (who may just as well be the targets of pricing schemes from big pharma, like the one here reported from insurance industry).

You think I'm exaggarating? Read this report in yesterday's Guardian about a just unmasked big pharma industry lobby campaign towards the Centre to have them grant quick and "easy access" to care.data material. A memorandum of mutual understanding has been sought, it transpires. Presumably in the same good spirit of cooperation that explains the reported handing over of data to private insurance companies. I for one is only that close to do a "what did I tell you" with regard to the supposedly strict vetting for access to care.data.

The attempt of the Center's management to push the toothpaste back into the tube by promising to "look into it" and announcing that the Centre is "considering" a beefed up anonymisation procedure, does not inspire confidence. Not when we know that such anonymisation is nowadays easily circumvented in many cases, and against the background of the obvious flaw of the whole basic idea from the very start. Using patient data for research by public research institutions (after due scrutiny, permission and consent), fine. There are, as Ben Goldacre argued just a few days ago, some pretty good reasons to make use of national health service and other health registry data to such an effect, reasons in terms of benefiting lots of people without putting anyone in harms way. The present idea of granting private business interests privileged access (indeed, access at all) is, however, not justified by such reasons.

On the very contrary. And hopefully, UK national policy makers, MPs and others, are now finally starting to see the flaws of this idea of inviting greed, corruption and sloppiness where the need is for ethics, care and seriousness.